I never thought I’d be walking my daughter through a sickness where we don’t just get to “move on.” Her medical chart no longer says “acute pain”—it now says “chronic” instead. We have moved into a chronic pain situation. With our 11-year-old. She is seeing a neuro-behaviorist, someone whose job is not to diagnose or fix anything. She is merely helping Grace to manage her pain, to live with it in a more graceful way. (I say “merely” with a grain of salt, because I think her role is very important, but the fact remains that Grace is not going to get better as a result of these appointments.)
The reality that this is becoming slightly more permanent (or at least long-term) is starting to set in for all of us. We are scrambling to get accustomed to our new surroundings. We can no longer just exist in survival mode until it’s over. We have to create rules and routines and expectations for the here and now. We’re not just getting through this, we are living this.
This morning, I am sitting in the waiting room for one of her now-regular trips to the doctor. And I am thinking about how often we—all of us, not just my family—treat our trials like time spent in a waiting room. It is time wasted, time to be endured until you can get to the one who will fix your problem.
I think, though, that we are missing out if we simply stare at our surroundings, waiting for time (and troubles) to pass. I think that often, the lessons are meant to be learned during the hard times, not in hindsight.
Even the Bible confirms this: “we know that suffering produces perseverance; perseverance, character; and character, hope.” (Romans 5:3-4 NIV) While I hate seeing Gracie suffer, it is producing in her an incredible ability to endure. She wakes up in pain every day, but she still gets up and goes to school. She doesn’t feel well, but she still wants to play with her brothers, go to church to see her friends, and enjoy time with our family. Although she often gets in the car after school pale and exhausted, she rarely complains.
We all wish we didn’t need to learn endurance, but it is a quality that serves us well throughout life. The character that comes with perseverance leads to hope, and as Paul goes on to say, “And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.” (vs 5)
Going through a trial gives you a whole new perspective on what’s really important. You learn what things you are willing to forego. You determine what things you fight for. The past few months have given me such an interesting insight into Grace. I’ve seen her choose to fight through pain to do things like go to church or spend the day with a friend. At other times she has skipped a birthday party or chance to get ice cream because she knew she didn’t feel up to it.
I’ve also learned that priorities don’t always need to be practical. As we have settled into this new life of chronic pain, I have tried to decide where to push her in her responsibilities like homework and chores and where to give her a break. And I have realized that while she does still need to be taught to be responsible (It is so very easy, especially at age 11, to slip into a “victim mentality” as I call it, and expect everything to be done for you.), it is every bit as important to prioritize things that feed her soul and keep her emotionally healthy. Violin lessons, some down time to play on her laptop, and chats with friends keep her spirits up and help her to be better able to face the work of responsibility.
We have never been uncaring toward people with chronic and/or serious health issues. But now we have newfound respect and compassion after our brief glimpse. Just like life with Joey has taught us so much about people with disabilities, this journey with Grace is opening our eyes to a whole new community of people. Thankfully, doctors have ruled out most of the big, scary things (like tumors) in our case. But the fact remains that our child is in daily pain, and we have no idea when or how or if it will be fixed. I realize now how much I have overlooked the struggles of friends who live with chronic pain. I hope that our lives moving forward will shine with compassion and love for those with chronic pain and health issues.
When Grace’s headaches first started, she would wake my husband and me several times per night, looking for some kind of help to make it stop. After a while, she woke us up less and less. At first we were hopeful, thinking that she was sleeping better and in less pain. We soon realized, though, that she was (is) still waking just as often, but not coming to us because she knows how to do the basic tricks we taught her (a warm or cool compress, deep breathing). She has learned to do life with pain. I hope that one day soon she will get to do life without pain so that she can really appreciate all she has learned to do for herself through this experience. Pain, suffering, and trials chisel away at the debris in our lives to reveal the strength and abilities within.
I know it seems odd, but it is absolutely true—trials teach us both independence and dependence. We learn that we cannot do this on our own. In our situation, we rely on family and friends to help with the boys during doctors’ visits. When she was still on crutches from the broken foot she suffered in the middle of all this, Grace accepted help from fellow students to carry her books between classes.
And ultimately, we have learned so much about dependence on God. Once a week, we fast and pray for Grace and for what God is doing through this whole ordeal. When Grace does come wake us up now, she doesn’t ask for medicine, but to asks us to pray with her. And He always shows up, whether in a card from a friend or a word of encouragement from a teacher or just a burst of courage to face a tough day. As I said in my previous post, it is in our weaknesses and trials that His strength can truly shine.
We’re not perfect
I almost hesitate to hit “publish” on this post, because I fear that I have romanticized our experience too much. Have I made it sound like we are sailing through, handling it all with grace and dignity? Because that is hardly the case. We get weary—correction, we are weary. Middle school can be such a tough time anyway, and now Grace is navigating it with the extra baggage of chronic pain and fatigue. On my end, I can’t always differentiate between issues caused by her pain and those caused by her hormones. I get exasperated with her illness, and I take it out on her. We gripe and snap at each other, and we have to ask for forgiveness. We gripe and snap at God, too. We don’t always do it well or appreciate the “gift” of this pain.
Yet we know that God is in this. He has a plan for this. He might get us to the other side of her pain, and He might just teach her—and all of us—how to live with it. Either way, we are choosing to live in the here and now, not just get through it.
This post is part 2 in a series on trials and pain. Read part 1 here.